PROBE Survey Reminder, News for People with VWD

Montreal, February 27, 2026 – A group of MyCBDR users will have received an email in recent days inviting them to complete the PROBE survey. These are individuals who have not completed the survey since September 2025 or have never completed it. The CHS urges those people to take 15 or 20 minutes to do so. Completing the survey can give you information about your own health and quality of life, and provide anonymous data to CHS to help advocate for access to novel therapies.

PROBE (Patient Reported Outcomes, Burdens and Experiences) is a short questionnaire prepared by patients for patients, collecting information about the impact of hemophilia on daily life. This questionnaire looks at factors people with hemophilia A and B identified as important to their quality of life, including the impact on activities of daily living, education, employment, and pain.

In the past few years, the CHS has used the collective, anonymized information collected through PROBE to advocate for access to novel therapies, including emicizumab (Hemlibra), extended half-life factor VIII and IX, including Altuviiio, and gene therapy for hemophilia B (Hemgenix).

The PROBE study investigators have received requests to extend the data collection to include people with von Willebrand disease (VWD). Good news! A questionnaire adapted for people with VWD is being developed and tested. Stay tuned. As soon as it is available, CHS will be publicizing it. Then, people with VWD will be able to contribute to learning more about the outcomes, burdens and experiences of people with von Willebrand disease.

To learn more about the PROBE study, see https://probestudy.org/.